Rumination Syndrome: Alicia’s Story
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Just try to keep up with 17-year-old Alicia. A competitive athlete since elementary school, the affable teen tried multiple sports before finding her place to soar – in pole vaulting. After a challenging start, Alicia went on to earn several of her school’s pole-vaulting records. She demonstrated that same inspiring, can-do attitude last year when faced with a challenging medical diagnosis: rumination syndrome.
Rumination syndrome is a functional gastrointestinal (GI) disorder that affects the way the brain and digestive system interact. It occurs when food that’s swallowed – but not yet digested – is regurgitated back into the throat or mouth. Regurgitation is a reflex, not an intentional act, and can affect both children and adults.
Alicia’s GI issues began abruptly in late spring of 2020. Initially, she experienced just a small amount of food regurgitating into her mouth. She remedied it by either re-swallowing the food or spitting it into a cup. But the incidents increased in frequency – to almost daily – and the amount of food regurgitated also increased.
“She just looked at me one day and said, ‘Mom, I just threw up in my mouth,’” recalls Peggy, Alicia’s mother.
“For 16 years, I never had a problem keeping my food down,” says Alicia. “Then, I couldn’t even keep water down.”
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After mentioning the issue to her primary care physician, Alicia was prescribed reflux medication. But her symptoms persisted. She was referred to a pediatric gastroenterologist who ordered blood work and an endoscopy. Tests showed Alicia had a minor sensitivity to lactose, but that didn’t explain her symptoms. The local gastroenterologist suspected the teen may have rumination syndrome – which the family had never heard of at the time – and urged the family to see a specialist at Children’s Hospital in Philadelphia.
“When we researched rumination syndrome, my husband and I couldn’t believe how closely the symptoms matched what Alicia was experiencing. ”
In November 2020, Alicia met with Jennifer Webster, DO, an attending gastroenterologist in the Division of Gastroenterology, Hepatology and Nutrition and the Suzi and Scott Lustgarten Center for GI Motility teams at CHOP. Alicia’s condition had rapidly worsened: she’d lost more than 20 pounds from her 5’2” frame, and was bloated, dizzy, cold and pale. A few times, she was even awakened at night by pain in her stomach.
“Any time I drank or ate something, it came back up,” Alicia says. Before the appointment, she and her parents read more about rumination syndrome on CHOP’s website – thinking it may hold a clue to her diagnosis and possible treatment.
Dr. Webster, Psychologist Sarah Mayer-Brown, PhD, and Clinical Dietitian Andrea Nepa, MS, RN, CSP, LDN, jointly evaluated Alicia, reviewed her test results and diagnosed her with rumination syndrome.
Next was the challenging part: finding the right combination of treatments for Alicia to regain lost weight, meet her fluid needs and stop the frequent regurgitation. Medication can help soothe some contributing factors of rumination syndrome but cannot reverse the condition. Instead, the primary focus of treatment is to relearn how to properly eat and digest food.
Dr Webster prescribed a lactose-free vitamin supplement; while Dr. Mayer-Brown began a series of telehealth appointments to teach Alicia how to use diaphragmatic breathing – sometimes called “belly breathing” – to fully engage her stomach, abdominal muscles and diaphragm when breathing. Diaphragmatic breathing prevents the abdominal muscles from contracting, as these contractions (or squeezes) is what causes food to come back up. It was an uncomfortable adjustment for Alicia.
“I really had to think about my breathing, which I’d never had to do before,” says Alicia. “I did everything I could to try to stay positive.”
Alicia’s resolve was challenged when she had to be admitted CHOP the day after Christmas to have a feeding tube inserted to ensure she received adequate nutrition. Clinicians trialed a few different formulas before finding a lactose-free version that her body would tolerate.
It was during this hospitalization that Alicia was diagnosed with a second GI condition, gastroparesis, which affects the spontaneous movement of the muscles in the stomach, delaying food from being digested or expelled by the body in a timely fashion. It can often happen after rapid weight loss as Alicia had experienced.
With more complete details about her condition – and new treatments started – Alicia began to improve. When Alicia’s body began to properly digest the nutrition from her feeding tube, she was released from the hospital on Jan. 3, 2021 – her 17th birthday.
For the next several months, Alicia continued her breathing exercises, and received extra nutrition by feeding tube at night. Slowly, with her doctors’ guidance and family’s support, she began reintroducing herself to eating food by mouth, starting with one cracker and one ounce of water every few hours. Eventually, she was able to increase her calorie count with each meal, logging her progress every step of the way. All the while, the National Honor Society student athlete kept up her grades and passed her drivers’ test.
By July 4, Alicia no longer needed the feeding tube. Today, she describes herself as happy and healthy. She must remain careful with her food portions to avoid sporadic regurgitation or lingering gastroparesis symptoms.
“I know it can come back,” says Alicia, “but I have the tools now to address it and handle it.”
Looking ahead, Alicia hopes to resume pole vaulting this winter, set new records before graduation and find a college where she can study nursing.
She envisions a future at CHOP – but this time as a nurse instead of a patient.